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Ensuring no one has to face Facioscapulohumeral Muscular Dystrophy (FSHD) alone

Our goal for all impacted by FSHD is two-fold: 1) Speed the delivery of effective treatments and a cure; 2) Ensure those impacted have what they need to live their best life.

Join our global community to help advance groundbreaking FSHD research, find the education and support you need, and build a strong community who understands and cares.

Ensuring no one has to face Facioscapulohumeral Muscular Dystrophy (FSHD) alone

Our goal for all impacted by FSHD is two-fold: 1) Speed the delivery of effective treatments and a cure; 2) Ensure those impacted have what they need to live their best life.

Join our global community to help advance groundbreaking FSHD research, find the education and support you need, and build a strong community who understands and cares.

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Advance Research

Every breakthrough in FSHD has been made because patients and their family members got involved. We believe a treatment is within sight; your participation will move us closer, faster.

HELP ADVANCE RESEARCH
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Educate Yourself

FSH Muscular Dystrophy is different for everyone. Each person has their own unique journey with FSHD.  The FSHD Society is here to educate and empower individuals to live their best lives until a cure is found.

LEARN MORE
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Build Community

There is great power in coming together. Around the globe, individuals with FSHD prove this every day. It is each person's unique strengths, skills, and interests that makes our community strong.

GET INVOLVED
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Invest in Hope

We bring people together to find solutions; researchers, doctors, the drug development industry, patients and families. Your participation is the key. There are many ways you can get involved.

SEE HOW YOU CAN HELP
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Who We Are

The  FSHD Society is the world’s largest research-focused patient support organization. We work with people and organizations to identify the barriers slowing down the discovery of treatments and cure, then work together on solutions.

Following the highest standards financial accountability, the FSHD Society has transformed the landscape for FSHD research, and is committed to making sure that no one faces this disease alone.

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FSHD University

Education: A Patient's Best Weapon for Change

FSHD University is your center for learning about the art and science of living with FSH muscular dystrophy. Our webinars and other resources are designed to empower individuals with FSHD to live their best lives, physically and mentally. Our departments of Physical Health, Wellness, and Research provide videos, articles, and other resources, by the world's top experts, including many people living with FSHD.

FSHD University is a place for you to gain knowledge, get connected, and find hope.

Learn More & Enroll in FSHD-U

Latest Blog Posts

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Stay warm and safe

January 4, 2023 by jkinoshita

Our monthly Wellness Hour invited Dr. Mark Tarnopolsky of McMaster University to discuss an issue that many with FSHD face in winter: feeling especially susceptible to cold temperatures. He explains the role of muscles in generating heat. Larger muscles generate more heat. His laboratory compared people who exercise three times per week or more with…

Read More...
Avidity Biosciences Announcement

FDA Fast Track Designation for Avidity’s FSHD therapeutic

January 20, 2023 by jkinoshita

Avidity Biosciences Granted FDA Fast Track Designation for AOC 1020 for the Treatment of Facioscapulohumeral Muscular Dystrophy SAN DIEGO, Jan. 18, 2023 /PRNewswire/ — Avidity Biosciences, Inc. (Nasdaq: RNA), a biopharmaceutical company committed to delivering a new class of RNA therapeutics called Antibody…

Read More...
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Upcoming Events

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Today

February 2023

Thu 9
Featured Featured Feb 9 @ 12:00 pm - 1:30 pm

Feeling Fit with FSHD: postural changes

18:00 PM CET | 17:00 PM UK | 12:00 PM Noon ET | 11:00 AM CT | 10:00 AM MT | 9:00 AM PT Join physiotherapist Ulrike Uta of the Muscular Dystrophy Support Centre (MD Support Centre) in Coventry, UK, for today's session. Postural changes in FSHD are expected and are caused by muscle weakness...

Mon 13
Featured Featured Feb 13 @ 5:00 pm - 6:00 pm Recurring Event Wellness Hour

Wellness Hour – Toward Hope

Zoom Virtual Meeting

5:00 pm ET | 4:00 pm CT | 3:00 pm MT | 2:00 pm PT This month we will be joined by crisis counselors Kylee Helmke and Andrea Morales to discuss mental health issues that affect the FSHD community. Depression is not uncommon, and too many families have been devastated by suicide. This is a...

Tue 14
Featured Featured Feb 14 @ 9:00 am - 10:00 am

FSHD Radio: Community Profiles

Facebook and YouTube

Tuesday, February 14th On the 2nd Tuesday of every month, join us for FSHD Radio: Community Profiles. Every month we will bring you a long-form show that will include profiles of the FSHD community living rich, full lives and diving into their experiences with FSHD. This month’s guest is Paul Ronson of Suffolk, England, a radio...

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Woburn, MA 01888    U.S.A.

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